Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Risk Assessment

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So, I’ve been wondering all weekend, what if I, what if we all have to self-isolate in response to the spread of COVID-19? The latest predictions, as confirmed cases and deaths here in the U.S. continue to climb, is that all kinds of restrictions are more than likely.

Thousands of Americans are already facing a range of constraints, from working from home for Microsoft in Seattle to cancelled classes at Columbia, Hofstra, and Yeshiva Universities in New York City—and everything, everywhere, in-between. Here in Massachusetts, a cluster of people who attended a business conference at a Boston hotel have come down with the virus, one Boston area school closed on Monday because of an infected parent, the St. Patrick’s Day parade has been cancelled, and the Governor is being peppered with questions about whether the Boston Marathon will be, too.

It just feels inevitable. The virus is already everywhere, and our lives are going to be disrupted for a while. So, what would it be like to have to stay at home (hopefully, only as a precaution, not because of having the virus, which is a whole other issue) for a couple of weeks?

Obviously, it pays now to stock up on essentials. I have all my prescriptions refilled, enough for more than a month. I have three boxes of latex gloves; plenty of canned goods, soap, and toilet paper; and enough hand sanitizer, for now. I even have a few surgical masks that I bought years ago for airplane travel, that I’ve never needed. Not as good as the N95 respirator mask, which should be saved for health professionals and people who are really at risk, but better than nothing.

Although I have some lung scarring from scleroderma, my rheumatologist tells me that it’s not significant enough to predispose me to pneumonia or make any recovery from infection more difficult. Which is a big relief. I’m certainly not going to try to test his theory, but it gives me more confidence about my risk level. Well worth asking.

So, back to my original question: what to do if I have to stay home for a couple of weeks? Fortunately, my work is already based here, so for me, unlike for many, that part is easy. Not true for Al, so we would have to absorb some income loss. I’m grateful that we could handle it, if necessary.

But two weeks is a lot of time to be stuck at home as a social precaution. One blog I read this morning actually had the best suggestion I’ve heard—learn something new. There’s plenty of free content online for perfecting a hobby you keep setting aside for lack of time, tackling that fabric stash for a sewing project, or learning another language. It’s also a good chunk of time to finally declutter your home (I’m talking to myself and my husband, here), or to read or reread those books that you never get to (and would otherwise give away because you’re decluttering).

With video chat, it’s possible to keep in touch with friends and loved ones and feel like you’re together, even when you’re not. It’s possible to organize support groups, to keep everyone’s spirits up during trying times. It’s possible to send kind and caring messages on social media, to counter all the fear and conspiracy mongering.

I certainly hope we don’t end up like Wuhan, China, or northern Italy, in government-imposed lock-down. But if we do face restrictions in movement to keep everyone safer and avoid a crush of cases that will overwhelm our health care system, then at least it’s worth considering how to make the best of a bad situation.

And, of course, there’s always Netflix.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Ryan McGuire

Wash Your Hands

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Every day brings more scary headlines about the coronavirus. Along with all the other bad news screaming for our attention every day, it sometimes feels like we’re all on the Titanic, heading inexorably toward that fateful iceberg.

But here’s the good news: One of the best ways to avoid getting COVID-19 is also the most simple and easily accessible: washing your hands after coming in contact with public spaces. Think about ATMs, touch screens at check-out counters, doorknobs, subway hand-straps, gas pumps—you get the idea.

I’m aware of this all the time because I have to be so careful about picking up an infection in one of my digital ulcers. While hand washing is the best option (20 seconds, about as long as it takes to sing “Happy Birthday” twice), I rely on hand sanitizer because I can’t get my bandages wet, and the sanitizer dries quickly. Use sanitizer that’s at least 60 percent alcohol and rub until it’s gone.

Likewise, the best way to avoid spreading the coronavirus—or any other contagious illness—is to practice good hand hygiene out of respect for others. That, and staying home when you’re sick.

Hand washing has been a cultural and religious ritual for millennia. But only since the mid-19th century has good hand hygiene been linked to better health in Western civilization. A Hungarian doctor, Ignaz Semmelweis, is credited with first discovering the connection in 1846 when he noticed that women giving birth in the doctor/student-run maternity ward at Vienna General Hospital had a much higher mortality rate than those in the adjacent midwife-run maternity ward.

Semmelweis determined that the doctors and medical students typically made rounds in the maternity ward right after doing autopsies. Midwives, of course, did not perform autopsies. So he figured that some kind of “cadaverous particles” were being transmitted to the pregnant women. His solution was to require all doctors and medical students to wash their hands with chlorine before treating his patients in the maternity ward—and the mortality rate dropped significantly.

Less than a decade later, Florence Nightingale championed hand washing in an Italian hospital during the Crimean War and also successfully reduced the rate of infections.

While Semmelweis and Nightingale were primarily fighting the spread of bacterial infections, hand washing works for preventing the spread of viruses, too. We’re all touching our faces more than we realize. COVID-19 spreads through droplets of fluid, from face to hand to surface to hand to face. All the more reason to wash or sanitize hands after being out in public.

It will be weeks and months before we fully understand the nature and true risks of this new disease. The number of people infected is certain to increase, both because of the exponential transmission rate and the fact that more people are being tested and detected. There is real reason for concern and vigilance. We need accurate facts, reliable reporting, and scientific leadership, not conspiracy theories and blame games.

In another time of high public anxiety, during the Great Depression in 1933, newly-elected President Franklin Delano Roosevelt reassured the nation with these famous words: “[L]et me assert my firm belief that the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Those are words worth remembering and repeating right now. That, and go wash your hands.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Daniel Levis Pelusi

Chain of Command

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For about a year, now, I’ve had a pit of calcium sticking out of the pad of my right thumb. It looks like a very small, gray pebble, but it will not budge. If I press on it or accidentally bang it, it smarts. It’s also an open wound that I have to tend very carefully to avoid infection.

Usually, when a bit of calcinosis finds its way to the surface of one of my fingers, I can either pull it out or it will pop out on its own. Not this one. Recently, when I tried twisting it with a pair of tweezers, the top broke off, but there remained a needle-like protrusion that is just as stubborn.

So, I finally gave up and saw my hand surgeon last Friday. One look under the fluoroscope, and we had the answer. That pit is the tip of a chain of calcinosis that stretches all the way down my thumb. I’ve known for years that I have a veritable Milky Way of calcium pits floating in both thumbs and other fingers, but never seen anything quite like this.

We discussed options and agreed that he would debride it in an outpatient surgical center. It would be foolhardy to try to clean out all the calcinosis, because (a) it will probably grow back and (b) the risks to my thumb’s ability to function are far too high, especially in my dominant hand. So he’ll just remove a bit at the top of the chain, so I can use my thumb with less pain. We also agreed he’d put me out rather than use local anaesthesia. Too much digging around in my thumb would make me too anxious.

He ribbed me that I always bring him difficult challenges, and I teased him back that I didn’t want him to get bored. This is the same surgeon who saved my hands two-and-a-half years ago from horrific ulcers that lifted up to reveal bone and two broken knuckles, so I trust him completely. Back then we built a great rapport and mutual respect. He told me I should teach a course on wound care.

Now I await word about a date for the procedure, as well as confirmation that the surgical center he recommended is in-network for my Medex BC/BS plan. There’s a back-up, if that doesn’t work out. Always essential to check, first.

So, once again, my hands are in good hands. I wish I didn’t need to see my surgeon, but I’m very grateful that he’s there.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Sonny Ravesteijn

Knee Deep

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It’s been a little over three months, now, since I fell and whacked my right knee. No visible signs of any injury or X-ray evidence of internal damage. Still, from time to time, it can still get achy.

I had mentioned this to my Boston rheumatologist back in early January, and he thought I may have bruised the inside of my kneecap. If the issue persisted another month, he suggested getting an MRI to determine if there might be a stress fracture. So, when I saw my local rheumatologist last week, I mentioned the residual soreness and asked him what he thought.

His advice: give it more time. He agreed with the bruised kneecap theory. But he also raised a really important point. If the MRI found a stress fracture, what would I do differently? Give that I have no trouble (thankfully) walking, standing, or sitting, there is no way I would want any knee surgery. The risks are significant (particularly regarding infection) and benefits in my case, questionable. I would just have a clearer idea of what was going on inside my knee, but—so what? Why undergo an expensive diagnostic, even if it were covered, or mostly covered, by my insurance? What’s the value-added to my ability to take care of my health?

Of the many lessons I’ve learned over 35-plus years of living with scleroderma, this was a really good reminder that not all diagnostics are worthwhile, especially when they might lead to more tests and complexity that doesn’t necessarily add up to better health.

So, I’ll just keep listening to my body and allowing my knee to heal. Going to the gym is helping or, at least, not slowing down the healing process. I’m up to a mile-and-a-quarter on the stationary bike, plus my mile walk on the indoor track. Climbing stairs is a bit easier, and I feel more energized, overall.

Obviously, if the pain were to worsen, I’d need to reevaluate next steps. But for now, it’s one less thing to worry about. And that’s the best health boost of all.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Ricardo Velarde

Viral

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Most weeks, I write this blog on a Monday, and this week is no different. I often don’t know what I’m going to write about until I get up that morning. Last Monday, however, it was good that I’d planned ahead with a photo essay, because I was just barely recovering from a really nasty stomach bug that had dogged me since Saturday evening.

This happened, of course, on a weekend when Al was out of town. For a good 24 hours, I could barely tolerate liquids. Monday morning, after a rough night, I did a little internet research and found a homemade electrolyte recipe for a mix of hot water, honey, lemon juice and salt. This helped enough that I no longer felt woozy, and I was gradually able to munch on rice cakes with a little date spread, to boost my energy with a slow metabolizing sugar. By mid afternoon, I had bounced back enough to return to my normal schedule.

It took a few more days for my system to fully right itself, but my point is, one week later, I’m feeling fine, thank you.

Our bodies, even when they don’t work perfectly, do have an amazing capacity for self-healing. Common sense, being attuned to symptoms when they first arise and responding accordingly, patience—all go a long way toward recovery. Obviously, this includes getting appropriate medical attention and treatments when warranted.

I’ve been thinking about all of this while watching the news about the spread of the coronavirus throughout the world. As of Monday morning, there were nearly 17,500 people who had contracted the flu-like disease in a few short weeks, mostly in China, and 11 in the U.S., including one here in Massachusetts. At least 362 people have died and 530 have recovered. The World Health Organization (WHO) has declared the virus a global health emergency, travel restrictions on flights to and from China are in effect, analysts warn of market instability, and surgical masks are sold out everywhere. Sadly, predictably, anti-Chinese xenophobia is also on the rise.

The prospect of a deadly worldwide pandemic is certainly terrifying—but the reality is that this virus is not nearly as deadly as this year’s version of the flu, an annual occurrence that we take for granted. Plenty of people don’t even bother to get a flu vaccine, even though it’s covered by most insurance policies. According to the Centers for Disease Control, there have been more than 107,000 confirmed cases of the flu in the U.S. since last September, and the virus is prevalent throughout much of the country. It has affected as many as 26 million Americans and is responsible for at least 10,000 and possibly 25,000 deaths.

That’s in four months. So why are we all so fixated on the coronavirus? According to the WHO, 2019-nCoV can cause mild, cold-like symptoms, like runny nose, fever, and cough. More severe cases can cause shortness of breath, which can lead to breathing difficulty or pneumonia, and, in rare cases, death. People with compromised immune systems are at greater risk (but that’s basically true for any disease). That said, this year’s influenza strains certainly pose a much greater health risk, at least, as far as we know.

Bascially, it all comes down to this: We’re used to the flu season. It arrives around October and ends around April. We know what to do (even if we don’t all do it). The coronavirus is spreading exponentially with an unknown trajectory, which feels threatening, and there’s no vaccine, because it’s a novel virus. Any vaccine would take a year to develop and produce in large enough quantities. And people have died.

There is every good reason to treat this virus as a serious public health emergency to contain its spread. But panic isn’t going to help anyone. If we can take the flu in stride (perhaps more than we should—it would be great, for example, if employees had incentives to stay home when sick instead of having to trade off health with cost of lost income), then we should be able to use commonsense hygiene and treat others with common courtesy when our coughs and sneezes are clearly putting them at risk.

The fact that flu seasons end every year, even when about half the country doesn’t get vaccinated, means that many people are able to heal and build up immunities, despite what truly is a deadly virus. I want to be clear that I am absolutely not arguing against vaccination, especially for those of us with chronic autoimmune diseases. I’m just saying that freaking out about the coronavirus is a waste of time and energy.

Better to stock up on soap and sanitizer, get medical attention when you need it, and treat others when you’re sick as you wish they’d treat you.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Dominik Martin